Thursday, April 29, 2010
It is a fact that the majority of women undergoing chemotherapy treatments gain weight! I call foul play! Unfair! How can this be so??? I though it was just the opposite! Oh no. Not the case. I was hoping that my weight loss would be: 6 months @ about a pound a week = approx 20 pound loss. (Who said I wouldn't ever use my math degree?) This Thanksgiving Day balloon doesn't need anymore helium!
Besides losing the hair on my head, I might also lose my eyebrows and eyelashes. Not the eyelashes! Anything but the eyelashes! I won't wear a wig, but I will wear false eyelashes; professionally applied so I don't end up like Lucille Ball in the movie, "Yous, Mine, Ours." I wonder who Tammy Faye Baker used?
Whacky thought of the day...
If you are under 45, do you even know who The Incredible Hulk, Lucille Ball and Tammy Faye Baker are? (The original "Yours, Mine, Ours" with Henry Fonda and Lucille Ball is one of my all time favorite movies! Yes, I own it - not on video, but on DVD!)
Wednesday, April 28, 2010
If nurses are the first comment, the gourmet hospital food is usually the second comment made by a former patient. Just think, if nurses could cook the food too...!
My nurses on Tuesday were no exception. When I arrived at pre-op, I felt welcomed to their little corner of the world. My pre-op nurse made sure that I understood the procedure, if I had any questions, and in her own, discreet way, checked to see if I was comfortable with the (minor) surgery. She said that she was sorry that I had to be there, and about the upcoming mastectomy. I gave my regular response,"It's just a boob, nothing important to keep my body functioning." When I was asleep, she turned off the light. When I was cold, she somehow knew to bring me a warmed blanket. (I love those blankets right out of the warmer! Wouldn't it be nice to have a warmed blanket every night during these frigid New England winters?!) When I looked bored, she came in for a little chit chat. (She just got back from visiting her son's family in Burlingame, CA. She said that her son, and half the families in her grandchildren's school, are renters because of the home prices. She was shocked to see a 2bed/1bath home for $1.2 million! I know, crazy. Welcome to the Bay Area...and people think the North Shore is expensive.)
I was impressed by how fit all the nurses are in day surgery. I have never seen so many fit co-workers in one place, other than at Nike. The grandma pre-op nurse was amazingly fit and strong. She is a avid bike rider. They must all be enthusiastic cyclists because some other nurses were talking about the Boston to Provincetown ride and a ride from somewhere in Canada to Portland, Maine. It takes a great deal of strength to constantly be moving patients, equipment and beds around. Plus, they are on their feet all day, unless they are putting on a floor show with strange equipment, or singing "I Left My Heart In San Francisco." However, their strongest muscle was their attitude, and it went a very, very long way!
Shout out to Mer P. - We all know that you will be one of these super nurses! Start working on your song and dance too.
Whacky thought for the day...
Television is grumpifying teenage girls. Bring back "Happy Days" with silly teenagers.
I have observed for many years that 97.6% of all American teenage girls have a huge chip on their shoulders, or they walk around completely aloof, bordering on terminal rudeness. The only time they show any semblance of joy or enthusiasm is when playing a team sport. (Unfortunately, this happy attitude is left on the field or court when the game is over.) If you watch shows targeting this demographic, all you see is drama, drama, drama. Very rarely will a character smile or show genuine happiness. It is not cool to be happy. It is not cool to show any signs of excitement. It is not cool to enjoy the moment. Even Riley slips into this teenatitude periodically, but fortunately Molly is usually nearby, doing something goofy, making Riley snap out of it.
Nowadays, high school girls act like grumpy old ladies, and nurses (sometimes) act like silly teenagers. I'll take silly teenagers any day of the week!
Tuesday, April 27, 2010
The pre-op instructions said no make-up. I try to not go anywhere without mascara for fear of scaring small children. At 5:45 a.m. I was thinking about the song "A Little More Mascara" from La Cage Aux Folles, so I plastered it on! Why can I remember a song from a Broadway musical I saw a million years ago in The City, aka San Francisco, with my brother, T, but I get the words "asthma" and "cancer" mixed up? Maybe I need brain surgery too.
I arrived at 7:50 for my 7:30 check in. Fashionably late. I had to put my necklace - 40th birthday gold locket with pictures of the girls in it, and wallet in the safe. They asked me to remove my wedding ring, but they would have to cut off my finger to get the ring. Since moving to the East Coast, I somehow managed to blow up like a Macy's Thanksgiving Day balloon. I am still looking for the release valve. Can you say, "s t r e s s - e a t i n g?"
After changing into a stylish hospital ensemble, pants, top & robe, I sat in the waiting area for only a short time. I walked to a curtained off pre-op"room" that was only big enough for the bed, a chair, an IV stand, and a few instruments. There were over 25 of these "rooms." I was curtained off only on the sides, which made it possible for me to watch the parade of doctors - some frighteningly young, nurses, med students, and techs go by. Since I was only divided by curtains, I could hear the people talking on either side of me. One neighbor, who sounded like an older lady, has had two hips replaced, two rotator cuffs replaced and was there for her back. She must be bionic by now. She kept telling the doctor that he looked too young to be a doctor. He kept telling her that botox made him look that way. I bet he was barely into his 30s. After a short time, I was wheelchaired off to radiology for another mammogram. Been there, done that. The nice young girl wheeled me through the bowels of the hospital to get to radiology. Clearly, remodeling has not hit everywhere yet. This area and the pre-op area could use a good cleaning with Mr. Clean Magic Erasers. (If you haven't tried these magical cleaning tools, you need them!) Dr. T. Best told me that Day Surgery will be in the new building currently under construction, adjacent to the main building. It will be open next year, 2011, for the hospital's 200th anniversary. Mass General is the third oldest hospital in the US. Remember that little tidbit for your next Trivial Pursuit game.
I had another mammogram on the right side. After this smashing event, I went into another room where a I was put into another mammography machine, but with a moon-shaped cut out in the upper smasher paddle, and a light projecting grids onto my smashed object. The radiologists were pinpointing the tiny metal marker that was placed inside my breast after the MRI biopsy several weeks ago. Next, they numbed the skin with a shot and inserted a wire down to the marker. I had to look away so that I wouldn't get poked in the eye. (During this procedure the saying, "That's better than being poked in the eye with a sharp stick" kept coming to mind. And the revised version, "Better than being poked in the eye with a long breast wire." The original is much better.) During surgery, Dr. T. Best followed this wire down to the marker and removed a mass around it. As the radiologist we doing the procedure, the two radiologist, x-ray tech and I were just chatting away. It would have been a nice little coffee klatch, except there was no coffee, and I was partly naked.
I was told not to move my right arm for fear of moving the wire. I kept it locked to my right side like a tin soldier.
Back in my curtained room, I watched more of the unending parade, read a little bit, and then finally feel asleep. When I woke up, I was famished. All I could think about was an In-N-Out cheeseburger with grilled onions, hold the tomato. Sorry non-Californians, you have no idea what you are missing! Five Guys in Gloucester is the closest we have found to In-N-Out, but not quite. (I am nauseous right now, so this writing this is not a good thing.)
At about 1:30 Dr. T. Best and a surgical nurse wheeled me into the operating room. Fashionably late. I think, this is the first time I actually had the surgeon wheel me in and out of the operating room. (I had 3 major surgeries - two resulted in babies, and 1 day surgery prior to yesterday.) Moving the bed around is no small feat because there are only millimeters for clearance on either side of the bed and the doorways. The surgery only took about 30 minutes. There were 4 RN's in the room and Dr T. Best. One nurse sat by my head that was curtained off from the rest of my body during surgery. She was the one who gave me the cocktail so that I wouldn't feel anything. Actually, we talked about cocktails as it was taking affect. And would your believe, she commented on my eyelashes, saying they were the longest eyelashes she had ever seen. See, La Cage was right, you should never go without mascara! I was awake the entire time and only felt a couple of sharp pains near the end of the procedure - no biggie. Dr. T. Best lived up to her nickname. Since the surgery - no pain, no swelling and no bruising. I have not even taken the prescribed vicodin.
The six of us ladies also had a bit a chit chatting before and after the procedure. Within the topic of conversation, I said something to Dr. T. Best about having a life. She said that being a breast surgeon is great because there are almost zero complications, and she very rarely gets phone calls when she is not at work. She clearly enjoys her job. I also learned that she goes to a dude ranch near Steamboat for vacation. I will give Steamboat a shout out as a great family ski destination.
The recovery nurses were quite entertaining. I didn't realize that a floor show was included. They were singing, looking up shoes on the computer I could see from my bed, and wheeling each other around with some weird contraption that looked like a bike mechanic's stand, pretending it was a pump for a well. One nurse was leaving in a couple of weeks for a trip to Northern California. She was spending one day and night in San Francisco, focusing on Chinatown, but didn't know where to stay. I recommended The Orchard and The Juliana on Bush St., and The Golden Gate Hotel on Post St. as smaller boutique hotels located close to Chinatown. Again, I wonder how I can remember the name of these hotels and the streets, but I get "asthma" and "cancer" mixed up?
I observed one odd, and somewhat disturbing situation while in recovery. Since there were a lot of unused curtained rooms, a young female doctor sat with an even younger male doctor - hopefully a med student, sat down in the middle of everything, for all to see and hear, and went over pain medications. The young woman doctor wrote down the numbers 1-9 on a piece of paper and asked the young guy to tell her what he knew about pain medications, and where they fit on the list. He went blank, and could not think of anything! I wanted to shout out: Codeine, Vicodin, Demerol, Morphine, Oxycontin, Tylenol, Ibuprophen. I kept thinking, "Holy shit! I hope this guy doesn't make any decisions!" (Oops, my 80-something Godmother is now reading this, and I better watch my language. Actually, I think I heard her say those exact words at my niece's recent wedding. After all, she raised a house-full of rambunctious kids. Hell, she is probably one that taught it to me.) Anyway, I didn't stare at the woman doctor and guy when they were talking; sometimes I pretended to read or sleep. Actually, I didn't listen to too much of their conversation because it wasn't that interesting. I read several chapters in my book, "The Women." It is about Frank Lloyd Wright and the women in his life. (When I grow up, I want to be an architect.)
Just as I was getting dressed to come home, I got very nauseous. A nurse gave me a nice parting gift of crackers, a gingerale, and a barf bag. I know this sounds strange, but it was a nifty barf bag. I was a collapsible blue plastic bag with one end stretched over a circular cardboard ring. Fortunately I didn't use it, and will keep it in the car for any carsick emergencies.
When Justin and the girls picked me up, the girls were uncharacteristically quiet. I don't think they said more than 3 words each on the entire ride home.
Later in the evening, Riley(almost 15) privately confessed to me that she was very scared when she saw me be wheeled out in the wheelchair. She said that I looked so helpless. What?! My hair looked good, I was dressed in my finest, and I even had on lipstick! I told her to tell me immediately when she feels this way, so I can assure her that I am okay. I also said that I will be honest when I don't feel okay.
I had to coax Molly (9), aka Little Miss Keep Everything Locked Inside, to tell me how she felt when she saw me in a wheelchair. She finally admitted that she is afraid that "all of this" is going to happen to her. I learned that this is a very normal reaction for someone her age. With the negative results on the BRCA genetic tests as evidence, I told her that this isn't something she can get from me, unlike her short height and her clever wit. I said that when I was her age, I was afraid of stuff like this too, but I'm not afraid anymore. (Well, sometimes I have my moments.)
Today I feel nauseous if I am up for too long. This is why it has taken me all day to write this jibberjabber.
Whacky thought for the day...
Why do zoos get a bad rap?
I was recently talking with a breast cancer survivor that is suffering her fourth infection since her reconstructive surgery two years ago. I mentioned that I am going to Mass General, and she said that she didn't go there because she heard it is a "zoo."
Why when places are busy or chaotic, we say it is like a zoo?
Have you been to a zoo lately? They are very neat and orderly. They are better shape than most kids' rooms. Mine included.
Sunday, April 25, 2010
I mentioned drains a couple of times. This is what I know and remember...Drains are put in after surgery to remove excess fluid that builds up under the armpit by the lymph nodes, but only on the operated side. (One side = one drain. Two sides = two drains.) The surgeon connects the drains during surgery, and they stick out of under the armpits. The drain is a long, clear, rubbery, 3 foot long tube with a clear football shaped ball at the end to collect fluid. The ball is about the size of the pump on a blood pressure cuff. The drains remain in until the fluid production ceases, which can be as long as 10 days. Yes, I will be walking around with tubes hanging out of my armpits, under my baggy clothes. I only hope that it is cool weather. Twice a day I will empty the fluid into a measuring cup, write down the amount of fluid in a journal, and then flush it down the toilet. The fluid starts our pink because it might have a tiny amount of blood. Dr. T. Best told me that it only takes a tiny drop of blood to made the fluid pink. By the end, the fluid turns yellowish. Isn't this lovely?! My friend, Nurse O. Canada said that she will help me with the drains, and I am going to hold her to it! Yuck! Gross!
Yesterday I said something weird to Molly. She has terrible asthma right now, so I told her, "Take your inhaler so we can control your cancer." What the heck?! I am such a knucklehead. I quickly corrected myself. I think that she is having the toughest time of all of us with the cancer, oops breast cancer, and that her asthma might be triggered by the stress. (Stress has triggered my asthma at times too.)
Today I got pink spikey hair! I really like it, although I look like an aging rocker. The pink doesn't totally stand out and somewhat blends with my normal, reddish hair, unless you look closely in the light. It's subtle, just like me! Riley thinks it's cool because some of her friends told her that if her mom gets pink hair, she will have the coolest mom in Manchester. Molly is not too keen on it. She asked me today how long it will take to grow back. She might have a tough time with this bald thing in a few months. I will have Riley take a picture of my hair and post it later this week. Thank goodness she is taking photography in school this semester and becoming proficient in Photoshop! She said that she can make me look better than ever!
I left off some stories of plastic surgeon, Dr. Chief, that Chubba thinks I should share... When Dr. Chief first came into the examining room and sat down, he said, "Tell me your story." I responded, "What do you want me to tell you?" He said, "Just tell me your story." Soooooooo, I started my story with, "I was born a poor bl-" pause, he finished the sentence, "black child....Steve Martin." I replied, "Then you know the story." It was nice to know that Dr. Chief had a sense of humor, and that he saw the Steve Marin movie. He said one other thing that greatly impressed me; he referred to his assistant- (not sure if she is even a nurse) as "my associate." By calling her his associate, he put her on equal footing. Boy, talk about checking your ego at the door!
Tomorrow I have day surgery to remove a chunk of my right breast. Dr. T. Best is looking for any sign of microscopic cancer cells. The surgery is at 12:45 p.m., but I have to be there at 7:30a.m.. What am I going to do for 5 hours before surgery? I know I have to get drugged up, but for 5 hours! I guess I'll start a new book or knit. The surgery will only take about an hour. I will recoup for a couple of hours, and then go home. The information sheet in my cancer binder states that it takes 7-10 days to get the results from the biopsy. I am guessing that Dr. T. Best has some power and will speed up that process. If it comes back negative, then May 18 stands as the surgery date. If is comes back positive, then I'm not sure if the date will change or we can stay on schedule.
Whacky thought for the day...
I was thinking of writing on my right breast, "Biopsy me!" so they get he correct side.
Thursday, April 22, 2010
As I was looking through the books about kids coping with mom's cancer, a very nice woman approached me and offered her assistance. When I explained what I was looking for in the bookcase, she said that she has some books in back, and to have a seat. She walked out with a large package of information. She gave me three books, not to borrow, but to keep. One book is titled, "The Blue Day Book For Kids," by Bradley Greive. I wholeheartedly recommend this book to parents for children of all ages, to be used on those days when your child comes home after a bad day at school. It uses photographs of animals to acknowledge the crummy feelings, but by the end the book your child can't help but smile.
The second book is a national bestseller, "Ida B," by Katherine Hannigan. It is written from the perspective of a 9 year old girl who's mother has cancer. (It does not tell what type of cancer.) Ida must go through a lot of changes in her life while they are dealing with her mom's cancer. It has a happy ending. I am going to read this aloud to both girls together. Molly, 9, enjoys when I read chapter books to her, and Riley always sneaks in to listen too.
The last book is for Justin and me, "Raising An Emotionally Healthy Child When A Parent Is Sick." The little that I have read has been helpful. As I have written several times, my biggest concern during this cancer ordeal is how it is affecting the girls. This is why the two situations last week were such a tremendous blow to me. I know the girls are strong, and put on a good front, but they are children. I think that often people forget that children are children. At least, my children are still children, and don't pretend to be older or wiser beyond their years. (Also, I refuse to let them get too big for their britches.)
The caring woman gave me two journals with a matching pen for the girls to write down their thoughts. Molly has gone to town in her book, filling several pages. I am curious to see what she has written, assuming she gives me permission to read it. She also gave me a little booklet written for teens on dealing with their parent's cancer. I didn't read it, but I saw Riley going through it.
At the resouce center I picked up some pamphlets on a variety of topics: chemotherapy, mastectomy surgery, biopsy surgery, etc...real page-turners!
It is through generous donations that resources centers like this exist. Thank you everyone who donated to make it possible!
Happy Anniversary Mor & Smurf, aka Mom & Dad - 53 blissful years! - 7 Children (7 bachelor degrees, 4 masters, 1 Ph.D), 11 Grandchildren, and 1 Great Grandchild in the oven!
Wednesday, April 21, 2010
There are two options for reconstruction, implants or a tram flap. The tram flap, which I call "trans fat", tunnels the fat from you belly up to your chest to make a breast. I think it should be called "trans fat" because you are transferring fat from your belly to your chest. (I tend to call a spade a spade - if you haven't already noticed.) Basically, you get a tummy tuck and boob job all at once. I think he said that he has been doing these procedures for 7 years. The benefit is that you are using your own tissue to make a new breast, leaving no chance of rejection, unlike a man-made device, an implant, that does have a risk of rejection. However, the recovery time is longer, and the stomach muscles are compromised - so no more sit-ups...so much for those 200 I do every morning. I guess if I actually did the 200 sit-ups every morning, the tram flap, or trans fat, would not be possible. The silicone implants are the same as always. The only hitch is that if I have to do radiation, there is a 50% failure rate in the implants. Not good odds. If this happens, he can replace the implant with another implant or do a tram flap after radiation is completed. Radiation can also affect the tram flap by reducing the size, but the chances are much lower than 50%. Decisions, decisions. What kind of boob do I want? It is difficult to think that this is even a decision process. It seems somewhat silly to me with all that's going on in our lives and the world. I am leaning toward the tram flap.
Monday is the day surgery biopsy. If it shows cancer in the right breast too, and a double mastecomy is needed, then decision regarding reconstruction changes. I do not have enough fat for two breasts. Good news, bad news. or Bad news, good news. With double implants, I will be like every other Californian!... okay, not all women in California, only half the women in California...well, not quite half, but many.
I liked Dr. Chief. He seemed very bright and appears to be on the cutting edge of technology, but he also has a relaxed and approachable demeanor. He the first doctor to print his e-mail address on his business card. He told me to e-mail him if I have any questions or concerns. I have 15 cards from doctors in my cancer binder, and Dr. Chief's card is the only one with an e-mail address. He received a cell phone call during our meeting, and apologized for needing to take the call. I thought, okay, he is probably arranging for Red Sox tickets. But after he told the caller that he needed to call back because he was with a patient, he explained that the person was head of the group funding his lab. You never ignore the money people! I'm not sure if I mentioned this before, Mass General is a research and teaching hospital affiliated with Harvard Medical School.
Whacky thought for the day...
Why is menopause called menopause? (I haven't experienced this wonderful rite of passage yet.) Shouldn't it be called womanopause, periodopause or nomoreopause? I think it is called menopause because it is a warning for all men when questioning a woman going through it...danger: men, pause before you speak.
Saturday, April 17, 2010
Mass General in Boston is so large that it has its own police force. When we arrived, there were Mass General policemen all over. We thought someone of importance must be arriving, but then we realized it was just to handle the incredibly large volume of people. We went into the wrong building, and had to walk around the corner to another building. This place is massive!
The cancer center takes up three floors. The breast cancer's doctors' offices are located just past the breast cancer boutique that sells hats, scarves, wigs, specialty bras, specialty swimsuits, and clothes. We arrived at 9:30 for a 10:00 appointment. Unlike a restaurant where you might get in early, we sat in the waiting room until 10:45. At all my other appointments I read a book. For some reason, I could not read. I almost felt frozen in my seat. The waiting room was nicely decorated with interesting art on the walls. Two large portraits were made completely from buttons. The carpet was interesting; it looked like a handknit sweater using slubby yarn. One wall was all glass that looked onto the corridor and outside. A 1,000 piece puzzle was sitting in pieces on a table, waiting for someone to put it together. During our time in the waiting room I saw at least 8 different people give the puzzle a try, but didn't see too much progress.
Speaking of wigged out, during the 1 hour & 15 minutes in the waiting room, besides critiquing the decor, I passed the time in my mannequin-like state watching people come and go. I tried to figure out who was wearing a wig and who wasn't. I know, strange. (All along, I have told everyone that even though insurance covers the cost of a wig ($250-$thousands), I am not going to wear one. I am strictly a baseball cap and scarf girl. I saw two bald women in baseball caps, and they looked great.) I think I could discern between a "good" wig and a less expensive wig. The cheaper wigs have a very blunt, stiff look to the end of the hair that makes it look the hair on a doll. It also doesn't seem to move much. One woman who was young, thin and dressed well, had a very nice long wig. I could barely tell it was a wig until I saw the back and it was separated just a little bit. This must have cost her some big $$$. She looked great. Now, you should know that I wasn't glaring at everyone like a whack job, just my own clinical observations. Seeing the average age in the waiting area, I know why I was called YOUNG by the doctors. One woman was telling a tech that she just turned 90. She was full of spunk, looked fabulous, and was there all by herself. You go girl!
Dr. T. Best, formerly known as Dr. Top Dog, spoke to us at length about reconstruction. (I just don't think the name Top Dog fits after meeting her. T stands for Thee.) She is advocating for reconstruction at the same time as sugery because she can save the skin during surgery, making for more natural. During surgery she makes an incision straight down the side from the middle, removing the center - nipple and all. (I'm getting a little embarrassed, but in the spirit of educating, I will continue.) It sounds like there will be very little scar tissue, and will look very normal, other than it is all white. A very small area about the width of a finger will be numb, and remain that way forever. She said that after a while the body adjusts, women don't even notice the numbness. A plastic surgeon will perform the reconstruction and work along side Dr. T. Best. Dr. T Best said that she has some favorite plastic surgeons, and that she will set me up with one. I have an appointment on Tuesday to meet the surgeon. There are a couple of different techniques for reconstruction, and I am curious to hear what the plastic surgeon says. I know that one version is a silicone implant and the other has something to do with tunneling your stomach fat under the skin, up to the chest. You get a two-for-one: a tummy tuck and new boob all at the same time. More about this later next week.
A genetic counselor came in to speak with us too on Thursday. She has the results from the BRCA 1 & 2 tests, but she said that there is one more test that most medical people outside the research field are unaware of right now. The BRCA1&2 tests are 85% accurate for screening a genetic mutation that leads to breast and ovarian cancer. A new test has been developed that will make up 14% of the uncertainty, resulting in a 99% accuracy. Fortunately, the the same lab that performed the BRCA screen will also perform this screen, and they can use the bloods samples from the previous screen. I only had to sign a piece of paper for the test to be done. Easy.
Mass General is a teaching and research hospital. I signed up for one study that only involves answering a questionnaire on an electronic tablet each time I come in for an appointment. I also agreed to another study regarding fatigue and radiation therapy that involved blood tests and questionnaires, but then I discovered that I would be required to have treatments in Boston. Since I am going to have radiation (if needed) in Danvers, I cannot participate in the research. I think there is one more study, but I can't remember. Maybe it was a study on how stress affects memory!
I had my arms measured by an infrared machine. Several measurements will be taken throughout the course of treatments. I think this has something to do with lymphedema, a swelling in the arms that can be a side affect of a mastectomy. I asked the tech if anyone's arms ever get longer. She said that everyone asks that question, and she hasn't seen it yet.
About 3/4 the way through the 7 hours of appointments an LPN which is the same as a LVN on the west coast, came in and offered us snacks and water or juice. Nurse Flo Nightingale also brought a packet of information on resources available to cancer patients. The floor below has a lounge and resource library for cancer patients. Books can be borrowed from this library. Also enclosed was a calendar listing wellness services, education workshops and support groups that meet in the lounge and meeting rooms. Some of the services listed on the calendar were stress and anxiety management, knitting hour, relaxation through meditation, chemotherapy-what you should know, and many more. Nurse Flo gave me a booklet to help children cope with their mother's cancer, oops, breast cancer. The booklet lists the phone number of the children's psychiatry department that will answer any questions and offer assistance. Nurse Flo had a great spirit and personality. She is the right person for this job.
The best part of the day was making it home in time to take Molly to soccer practice in Essex. She had a game today, and scored her first goal!
Whacky thought for the day...
I am afraid that I am becoming nocturnal because I sleep more soundly during the day than I do at night.
Shout out...thank you Bubble Wrap for taking Molly last night at the last minute so that Chubba and I could go out - a very rare treat! You're the greatest!
Friday, April 16, 2010
Going to Gillette Breast Center at Mass General Hospital was like going from the minor leagues to a big league/World Championship team! This is not a slight at my previous doctors - after all, the minor league players are darn good ball players.
I met with 5 doctors, a genetic specialist, a LPN - aka LVN, research managers, and a tech that measured my arms. Every single person asked us questions about our family, how many children, their ages, gender, how they are doing, and what type of work we do. They were genuinely interested in us as people dealing with an awful disease, and not just patients going through a procedure. Not one person showed any sign of arrogance or complacency. I think that when you are confident in what you do, you do not need to tell the world how great you think you are. The other interesting observation is that every person seemed to really enjoy what they do, making a cancer center a positive environment. Doesn't that seem like an oxymoron - cancer center/positive environment?
My new surgeon, Dr. Top Dog, is an amazingly smart woman, and would you believe, that she's beautiful too? Don't you just feel sorry for women like this? Last year she performed 530 mastectomies, and 80% of these women underwent reconstruction at the same time. (How does one person do that many surgeries that are 3-6 hours long, meet with patients, keep up with the endless paperwork, and have a life?) Dr. Top Dog explained to us, in a way that we had not heard previously, my type of breast cancer - lobular breast cancer, the surgery procedure - incisions & length of surgery, recovery expectations, drains, reasons for undergoing reconstruction at the same time, and the risks involved. Her explanation how the lymph nodes are involved was very different from my previous surgeon, Dr. No Nickname. This was an unsettling revelation. This was also the first time the risks related to surgery were explained to me: skin tear, bleeding, infection and blood clot.
Lobular breast cancer is a microscopic cancer that doesn't easily read on mammograms. It is a strange cancer because it can grow (not spread) rapidly. This rapid growth helps explain how a cancerous golf ball landed in my left breast seemingly overnight.
Dr. Top Dog wants to do a day surgery biopsy on the right side on April 26. She will remove a large sample surrounding the biopsy on the right side. She wants to make sure that no microscopic cancer cells are hiding in this breast.
The tentative surgery date is May 18 - two days before Riley and my mom's birthday. I feel bad for Riley because birthdays are very special in our home. (My mom always made them special for us growing up.) And with all the crap that she has been through with "friends," and all the help she has given us with Molly during the plethora of appointments, she deserves a great 15th birthday. (She is excluded from another party with her group of friends, scheduled for this weekend.) However, she is not complaining about the surgery date. The surgery date may change if the biopsy comes back positive for cancer because they will need more time scheduled for the operating room.
We really enjoyed meeting the medical oncologists, especially because they called me YOUNG many times. Chubba told them about my blog, and that I give everyone nicknames. They seemed interested in reading this babble; so just in case, I better give them interesting nicknames. My previous oncologists were Dr. Ice Milk and Dr. Vanilla Bean. These two women are much more interesting than vanilla! This first oncologist, Dr. Hot Fudge appeared to be very young, and is from Pennsylvania - the home of Hershey chocolate. The more senior oncologist, Dr. Banana Split, is also younger than me and has two young boys, so she must sometimes feel split between work and home. We working moms could all wear the title Banana Split! Drs. Hot Fudge and Banana Split explained that I will have chemotherapy for 3-6 months following the surgery. The length and type of chemo cocktail will depend on the involvement of the lymph nodes and the pathology report of the tumor/golf ball. The treatments will begin approximately 4 weeks after surgery. They also said that I will take a cancer drug, Tamoxifen for 5 years.
The last two doctors were radiation oncologists, and came in at separate times. The first one was clearly junior to the other. Dr. Junior explained that the need and length of radiation is not known until after surgery because they need to know if the lymph nodes are involved and the pathology report of the tumor. After we spoke a bit, there was a knock on the door, and someone said, "conference." The five doctors met to discuss my case and course of treatment. We met the senior radiologist after the conference. He explained the radiation treatment in depth. Dr. Senior explained that fatigue is a major side affect of radiation. I can't imagine being more tired that I am right now. (Maybe this is due to the fact that I slept only 5 hours on Tues. night and 3 hours on Wed night.) Radiation begins about a month after chemotherapy ends. He said that they give the patients and month "off" between treatments as a break from appointments. Because radiation is every day, M-F, for 6 weeks, I told Dr. Senior that I will be having my radiation treatments at Mass General's satellite hospital in Danvers. He said that he will determine the course of treatment, and then turn it over to a radiologist in Danvers. Drs. Junior and Senior will not be my radiologists after the treatment because they stay in Boston. Dr. Senior also confirmed that the conference determined that I will undergo a single mastectomy with chemo, and that the biopsy on April 26th will dictate if more is needed.
Next blog: the waiting room, wig inspections, more genetic testing, arm measurements, research, reconstruction, and resource library.
Whacky thought for the day...
I am thinking of cutting my hair very short, so when I am in the hospital I don't have terrible bed head, and it is easier to deal with when it falls out from chemotherapy. (It is currently an angled bob.) Also, I am thinking of putting some pink (for breast cancer pink) streaks or highlights in it! This would be the only time in my life I could get away with pink hair, plus this is what the YOUNG people are doing! Chubba thinks I'm crazy.
Wednesday, April 14, 2010
Yesterday I went shopping for a dress and shoes for Riley's school concert. Yes, I know, shocking that a teenager might wear something that her mom picks out. Actually, to Riley's shock, I did well. Anyway, I squeezed in a few minutes for me and went to Nordstom's lingerie dept looking for an alternative to the hospital muumuu, aka Johnny. Still, I don't understand that name Johnny for something that can only be described as a wardrobe malfunction. (I also went to Victoria's secret, but only found garments appropriate if I was increasing my breasts, not reducing them!) I couldn't find anything at Nordstrom that would work, but out of curiosity, I started talking to the saleswoman about prosthetics and bras because I had read somewhere that Nordstom works with women going through beast cancer. I learned that Nordstrom even bills most insurance companies directly for this stuff, but of course, not my insurance, Blue Cross. Nordstrom has someone in each store that is certified in prothesis fitting. The certified fitter and the saleswoman in training for cerification took me into a fitting room to show me all the stuff. It is quite interesting. Nordstrom carries a special bra and camisole to wear after surgery with removable pockets for drain tubes. They are made of soft cotton so that they don't aggravate the incisions, and designed so that you either step into them or snap front because you don't want to lift your arms. After surgery, the range of motion is limited. They have two pockets in the cups when you can instert little pillows called "poofs." I kind of chuckled when I saw them because they reminded me of something Molly would put under her shirt and prance around house, inciting laughter from all in view. (You might be wondering about the drain tubes...not so sure myself, makes me kind of queezy, but will find out more tomorrow.) She even showed me some prosthetics that looked a little, not sure of the right word, strange and interesting - it looks like a fake boob that you wear next to the skin, under a bra. Yikes, do I really want to go there? This was quite a learning experience, and I was very impressed with the women and lingerie department at Nordstrom!
Riley asked me today if I am excited about tomorrow. I think that I am more eager than excited. I have been in a holdng pattern for 4 weeks. I am ready to move forward, but am bit nervous at the same time.
Stay tuned...it's just getting good.
Monday, April 12, 2010
My first request for records was on April 1st. Today is April 12th ,and I finally received my last report via fax this morning. I made at least 20 phone calls, faxed three record release requests, and drove to two locations to gather reports, films and disks. I thought that everything could be sent electronically because doctors within Bev. Hospital system has access to everything electronically, but no. The other oddity was that the records people seemed a little deffensive, like I was asking them to give me copies of top secret information. Since I pay for the tests, don't I own them?
Last week I drove all over the North Shore, picking up medical reports, disks and films. My last stop was Beverly Hospital in Danvers where the majority of the "stuff" was located. After I was handed a large, official looking envelope from the reception desk, I decided to sit at a table in their little cafe and check the contents against my checklist. Guess what? The ultrasounds, the bone scan and the CT scan were missing. When I went back to the receptionist, a 60 year old woman right out of a sitcom - the clothes, the hair, the make-up, the nails, the perfume, the heavy accent, and told her that I was missing some disks, she handed me the phone to call Ms. Perfect, the woman in charge of records. Ms. Perfect walked out of her office and over to me as if she was going somewhere with a definite purpose. She pointed to the two enclosed disks and said that all the information is on them. I very nicely - which is not always easy when you are donkey hanging over the edge - explained that the labels on the two disks read, "MRI" and "MRI Biopsy." She told me to wait a minute, and returned with two more disks that read "Ultrasound" and "CT Scan and Bone Scan." She apologized and said that she has never made this mistake before and that she had to run to take her daughter to an appointment.
It's a good thing that Ms. Perfect works in the medical field and not the building business. Or is it?
Whacky thought for the day...
Why is it so hard admit when we make a mistake? I find people who make a mistake and own up to it are much more intelligent and capable than those those that make a mistake and hide it.
Friday, April 9, 2010
I like to get painful situtations over quickly and move on. My kids rarely ask me to help them remove a band-aid. When I was first diagnosed with breast cancer, I though it was going to be a quick process without too much time to think about it. However, the myriad of tests proved to be the left side of the band-aid, the pause in the middle is much longer than I anticipated, and I am hoping April 15 will be the beginning of a quick yank of the right side.
I have only one week until my appointment at Mass General, but it feels like a week in dog years.
My nerve endings feel like they are right at the surface. Someone should borrow a sign from the zoo and put it on my back, "Warning: turtle may snap at any time." I confided in my neighbor, Mary, that "I am a donkey no longer on the edge, but with at least two hoofs over the edge." She said that I definitely have and edge to me now. I feel like I have more edges than a set of levelor blinds. Oh great, I have reduced myself to a cheap, but effective, window covering from Home Depot. Two nights ago Riley asked me, "Mom, would you have a drink, and hit it hard?" "Hit it hard" translates to skip the occasional Shipyard beer and move to one of the clear bottles in the cabinet above the refrigerator, aka vodka. Unfortunately, I finished the vodka a few nights prior - there was just a little left- no need for rehab after this week. I know. No fun.
Whacky thought of the day...
I have been thinking about this reconstructive thing, and a few whacky thoughts come to my mind: When women get very old - late 80's - gravity does unpleasant things with out breasts...they end up resting on our belts or waistbands. The waistband then becomes a supportive device. So, if you have reconstructive surgery, will the breasts be the only part of the body defying gravity? Will the chin then end up resting on your chest?
My niece saw this on a t-shirt: "Yes, they are fake. The original ones tried to kill me!"
Wednesday, April 7, 2010
This week I am gathering all my records, slides, films and disks to send to Mass General. In the recent weeks I had 2 nuclear scans, 1 CT scan, 3 mammograms, 4 ultrasounds, 3 biopsies, 2 MRIs, and a partridge in a pear tree.
Whacky thought for the day...
Why is it everytime I have an appointment to get my teeth cleaned I floss religiously for the week before the cleaning and the week after the cleaning? The rest of the time - sporatically.
Happy Birthday Eric in the UK!
Tuesday, April 6, 2010
Recently we were at out local bookstore making Easter crafts/decorations for their window display. Three 5th grade girls came in and joined us. I know the girls because I substitute taught them at our local elementary school. (Substitute teaching is the most underpaid and underappreciated job - except of course for the more difficult ,underpaid and underappreciated job of a stay-home mother/father.) The girls commented on my pink ribbon earrings that Riley and Molly recently gave me for my birthday. One of the girls said that her aunt had breast cancer and is doing fine. I said that I did too, but it was nothing to worry about. Immediately, both Riley and Molly chimed in, "She's not going to die."
I feel their fear.
Clearly and natuarlly there is a level of fear that both Riley and Molly feel about the cancer, oops, breast cancer. They are acting so brave, but I can tell that their emotions are sitting a little closer to the surface. It must be difficult for them to worry about their mother all the time. I know I would feel the same way about my mom, and I'm an old lady that supposedly has coping skills. It would be scary to be 14-almost 15, and 9, and have a mom walking around with breast cancer. Last week while I was cleaning the house, I had "what if" thoughts that brought about non-stop tears. The tears were for Riley and Molly, not for me. I constantly worry about their worries - and that's a whole pile of worries. Maybe I should stop cleaning the house and then I won't have "what if" thoughts!
I feel their pain.
On top of anxiety of a "sick" mom, Riley has to deal with high school "friends." Last Friday a good friend in her large group of friends had a very fun party. About 20 kids met at the local sports field and broke up into teams for a scavenger hunt. They ran all over town - aka village -looking for clues. If you were downtown, you couldn't miss them. (Manchester is a tiny town of about 5,000 people where you can walk everywhere - town, school, beach, harbor, sports fields, etc.) There appeared to be only one girl from their group not invited - Riley. There is no logical reason for this exclusion, other than a girl that has bullied her for three years- both physically and emotionally - could have masterminded this hurtful situation. She was hurt beyond measure, absolutely crushed, and she said that she felt numb and "completely empty inside." Nothing sucks worse than mean and inconsiderate teenagers picking on the people least likely to fight back - the nice ones, especially when it is your child. (I guess it makes sense that they wouldn't pick on the tough ones. Bullies are cowards.) (Yes, I reported the bullying to the school this year, but they will not do anything until Riley puts in in writing - and I can't get her to do it.)
Things could be worse.
Do you ever say, "Things could be worse, I could..."? In the past I said, "Things could be worse, I could have cancer." which is the same as, "Things could be worse, my girls could be hurt by friends." Now I say, "Things could be worse, Justin could be fighting in Afghanistan," I know that he is way too old for the military - so this is safe.
Whacky thought for the day...
"Doing nothing is the most tiring of all, you can never stop to rest." - Harry's Donuts, Merced, CA